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Tuesday, June 28, 2011

Q&A #196

what date are you moving?July 6th!!! Right around the corner!

Are the kids sleeping on campbeds or are the photos deceiving?? That is pretty much packed up!!!They are... Kennedy and Keeghan are on cots. Kass and Kam are on the floor. They are all in one room because the girls' room is full of boxes. Kellsey is still in her room in her bed because she doesn't do change well (and because she doesn't sleep at night hardly ever so she needs to be in her room so she can be awake without bothering anyone). We sold the girls bunk beds and Kameron's bunk beds and Keeghan's toddler bed, so they're not packed, they are GONE! But Kassidy, Kennedy and Keeghan are all taking beds from my mom's house so we don't have to buy new. Kameron will be getting a "new" bed (new to us at least) once we get to Colorado. I really want a captain's bed for him. We'll see. *whew* I'm so excited they will each be in their own rooms!!! Bedtime has been rough with 4 in one room, just getting them to settle down at night! I'm ready to GO!!!!

Okay, now IF I was G*d (and I'm NOT!!!), I would have made Newborns stay tiny for 3 or 4 years and teenagers for only 1 year!! : )What a beautiful baby girl! I know you must have been IN LOVE!! Come on? Wouldn't it be nice to have kept her that teeny, tiny baby for a few more years?? Hmmm Maybe... however, I do not miss changing all those diapers! ;)

I love the expression on her face in the 3rd picture (her 1st real picture)! She is such a pretty young lady :)Me too, always been one of my favorites!

lovely!! I hope u do a blast from the past on them all. So darling. I adore the hospital photo, that's the sweetest hat. You must've gotten the biggest giggle from that! I like that 1st portrait too. Looks like Sears? Penneys?Yes, I loved that hat! LOL I think Keeghan wore it, too! Actually, I think that portrait was done at Kiddie Kandids. We used to go to them a lot!

Does he still say his R's like that? I know this is old but it seems like he does in all videos....did he ever do speech therapy?Whew! That video IS old!! One of my favorites of my little guy though! :) He was in speech therapy from 2 1/2 (when he wasn't talking at all) until almost 5 years old... when he was about 7 he asked me, "Mom, why do R and W make the same sound?" I said, "Only to you, baby!" As for now, I actually had to ask Frank if he still says his R's wrong (Kam's in bed right now) and Frank says no, he says them correctly now. I'm so used to the way he talks that I never notice things like that anymore!

Very cute. :) Is it just me, or was she a tiny baby? Especially when comparing her pictures to Kameron's I think she looks tiny. Kennedy was 6lbs, 3oz when she was born. Kameron was 7lbs, 13oz, so Kennedy was small compared to him... however, Kassidy was only 5lbs, 13oz when she was born (I had toxemia and had to be induced early), so she wins for my tiniest baby. :) (Keeghan was 7 pounds even.) BUT Kennedy stayed tiny for the longest because she had a blockage in her intestine called a duodenal web that went undetected for the first 7 months of her life. She only weighed 7 pounds at 7 months old. It was a rough first 7 months of life... once that blockage was discovered though and they were able to get her nutritionally stable enough to operate she finally started growing!! Of course even now at 7 years old, she's only about 35 pounds, so I guess size is all relative! ;)

Can she still put her feet up to her head like that, lol? Very bendy ;).I'm sure she could if she tried! She's very flexible!

She still looks exactly the same!!! Kass and Kam don't look anything like their baby pictures, but Kennedy is identical to hers, just bigger! LOLI agree! I was looking back at these pictures thinking, "OH my goodness, she still makes these same faces!" hahaha

She sure was a little baby, and very bendable even with the neck. OUCH that hurts to think she slept like that. Can she still do that? I am assuming it was because of her neck issues is why or how she could do it but do not know for sure. She can still bend her legs like that I think, but probably not her neck... she lost some range of motion after her surgery... there are lots of pins, wires and titanium plates in there!

How fun!! Who is the singer/songwriter, and what will they do with the video?His name is Earl Arnold and he's been in the Christian music industry for years in different capacities. His plan is to take the video and get it out to churches nationwide (and he said he has some connections with the Jerry Lewis telethon, I think?). We will see what happens!!

What a cool experience for all of you! That is amazing how much Katie and Kennedy resemble each other. Please post the video to your site when it's finished, I would love to see it.I will for sure! I can't wait to see it myself! :)

Oh my goodness! He was and still is such a cutie pie. I love those is brown eyes!
He is definitely going to steal some hearts one day but hopefully that will not happen for about 30yrs or so. LOL!!LOL 30 years?! That would make him 34!! I hope he finds someone before then! ;)

Great question and great answer!!
I was wondering if you chose to have an amnio with Keeghan's pregnancy? Do you think it would be better to be prepared for a DS diagnosis before birth, or deal with it after the baby is born? That is also a great question and I really have two different answers. Or maybe three different answers! HA! First, I know several parents whose babies were diagnosed with Down syndrome prenatally and many (but not all) of those parents have said they wish they didn't know. They have said that it made their pregnancy more stressful... they feared the unknown and there was nothing to "fix" in a sense (like heart issues for example) until the baby was born, so it made it harder. Now, the grass is always greener on the other side. I wish I would have known prenatally with Kennedy. I wish I could have researched and read up and found online forums of other parents who had kids with Ds already and looked at pictures of their children leading normal lives so when they handed me all that outdated paperwork from the 70's in the hospital I could have laughed in their faces! LOL I'm sure I still would have stressed, but I did anyway (because that's what I DO, I'm a stresser!). That being said, when we decided to have Keeghan we decided that even if he were born with Down syndrome, we would be absolutely 100% ok with that. If we weren't, we wouldn't have gotten pregnant. So, I did not have the amnio and in fact I declined the AFP (aka Triple screen or quad screen) as well. It simply didn't matter to us. What did matter to us however was whether or not he had heart issues, so we had level 2 ultrasound done just to make sure his heart was ok. We knew that the hospital on Post (where he was supposed to be born) could not accommodate a baby with severe heart defects so if there was anything going on in there, we wanted to have my OB care transferred to a larger hospital. Thankfully all was well. Towards the end of my pregnancy I ended up with cholestasis of pregnancy so my care was transferred anyway. Ahhh! Never a dull moment! :)

Keeghan is such a ham! What a cutie! On a completely different note, as I was typing that into my iPod, the auto-correct changed Keeghan to jewfish. How weird is that? And what the heck is a jewfish?? LOL! I know! LOL It does that to me when I'm texting, too!!! LOL I cracked up the first time it did it! It also changes Kass to Lass and Kam to Jan! HA! SO annoying! And according to google, this is a jewfish! I think Keeghan is much cuter! ;)

Please know that this is an honest question coming from someone who is adopting, and who is going into it knowing full well the complications and emotions that may arise. I appreciate and 'listen' to you.I will try to answer your questions the best I can... please remember that every child, every baby home is different...

Seeing the photos of kellsey, I am wondering, after so much time, how you are all doing?We, as a family, are doing ok. We have had a really rough year and there have been extenuating circumstances that I really cannot go into that have made it more difficult that necessary. Some days are easier than others.

I know that you have spoken of difficulties in regards to her attachment. Do you believe that this is a result of her time in the orphanage? Do you believe this is simply 'kellsey?'
Yes. To both. I believe that some of it can be attributed to her time in the orphanage... she had a rough first three years of life and attachment disorders are common. I believe some of it is most definitely just Kellsey. And that's not to say that anything that she is going through is her "fault" in any way. She has a lot going on with her that needs attention. And of course, developmentally she's about 2 years old which means she's going through her "terrible twos" which is always fun! ;)

What, if anything, have you investigated to improve her connections to you?
We tried to get her help here and unfortunately the resources here are... not very good. Her pediatrician is wonderful and has given us some ideas about what is possibly going on with her... which wasn't a huge shock to us. We are anxious to get to Colorado and hopefully get her the help that she needs. We have heard great things about the resources available there and are hopeful for her future.

Knowing what you do about her, would you change anything about her adoption? For instance, time spent with her when you brought her home? How you interacted with her?
I don't think there's much I can change about the time I have spent with her... besides the time she was in school, I am always with her. I definitely would have done more research into the therapies I sought out for her. We went backwards instead of forwards. We'll fix that when we move. I'm sorry, I feel like I haven't answered this like you wanted, but I'm not really sure what you're looking for here.

For all the challenges that she has brought, if you could, what would be the one thing that she has brought that outweighs those challenges? She has taught us that there is always something worth fighting for. She has made me bring out my "mama bear" and fight for her, for our family, for what's right. She's opened our eyes to other disabilities - with Kellsey it's not "just" Down syndrome we're dealing with... it's Reactive Attachment Disorder and possibly more. It's pulling her out of "her world" and hearing her giggle when we haven't heard it for days. And cherishing those moments. And it's made me realize that other people, on the outside looking in, will probably never understand. They'll probably never "get it". They'll never understand why she is happiest when she can just sit in "her spot" in the living room and obsessively draw circles on her magna doodle for hours, ignoring the world going on around her. They'll never understand how she can go from happy and charming one second to sulky and withdrawn then next without any provocation. They'll never understand why, even though she's having a blast swinging in the swing, she doesn't smile, doesn't laugh, but doesn't want to get out either. She just is. And so, I stop explaining. It does me no good. I can talk until I'm blue in the face and no matter what I say, I am in the wrong. But we know we are doing the very best for this very complex little girl who we do not understand. We are hoping that we find the right doctor in Colorado who can help her (and help us help her) reach her full potential. I have a feeling Kellsey has a lot to teach us... I'm just not sure what all that is yet. Either way, I know it's going to be quite the roller coaster ride!

Wow, scary stuff. Hopefully she'll be okay. Wonder how she picked up a staph infection? I know they can be pretty much anywhere though.Who knows?! Sometimes I think it just stays in her body permanently!

For the shh, shh, shh... If the noise is bothering her enough at night, a white noise machine can help greatly with 'blocking' the noise. You can either buy a cheap machine or place a fan on medium. Well, now that she's on the medicine, she hasn't mentioned the noise again, so I'm guessing it's gone? She does have a fan in her room that runs all night though. :)

12 comments
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Can't believe how fast your move is coming up. I wonder how Kellsey will deal without her spot ;). Just so you know CJ sometimes suddenly gets sullen and pouty for seemingly no reason. So I guess it could just be a toddler thing ;). I'm sure you'll find whatever you need to help get her out of her shell. When you think about it 3 years spent with little to no human interaction where your smiles weren't returned with smiles it all makes sense that she'd be so withdrawn. That didn't happen overnight so I guess you can't expect it to change overnight. And it might never fully be right, but I know you are doing everything you can for her. And of course she'll always be way better off with you than where she would have been had you not come into her life.

Just wondering, and sorry if you've already answered before...when does Kellsey sleep if rarely at night?

Also, I know you are sensitive to the attachment issues you've had with Kellsey. I think you should know that as an outsider who only knows your family through the pictures and stories you post, it is clear that she is happy. The early pictures when she first came home, her eyes were a little empty....confused. Now, every single picture you post of her, she looks like a little girl who knows she is loved and valued. You are doing a good job with her.

"help us help her...reach her full potential. I have a feeling Kellsey has a lot to teach us... I'm just not sure what all that is yet."Your post made me cry. I admire all your children, but having started to read your blog just as you announced you were planning to adopt Kellsey, I have a special place in my heart for her. Your parenting with her is admirable (don't let the mean people get you down) and--like our struggles as parents of children with cancer--no one is truly going to understand unless they've been there, done that. That she has a loving, UNDERSTANDING home makes all the difference. All children should be so fortunate.

I read about you saying that Kellsey has R.A.D. and I recently discovered this blog - http://www.storinguptreasures.com. This lady has done quite a few adoptions and some of her children struggle with R.A.D.

Wow, your moving date is just around the corner. I always like the feeling of "a fresh start" that comes along with moving to a new place. :-)

I do not know why I did not think to ask you before. but how hard was it for you to get your adopted children into DEERS, was it easy because you had adoption papers. My husband niece just awarded us custody 2 weeks ago of a 1 and 3 year old. we have temp custody until Aug when we will have full custody which is when we can put them on DEERS. do you have any suggestion. I would love to invite you to read my private blog about the boys. I talk about them on my family blog but try to save the personal stuff for the private blog

Thank you so much for your insightful and helpful answers to my questions.

I don't know if you have ever read it but a book, written by a woman with Autisim called Thinking in Pictures is wonderful. It might be helpful because she too, as a child, would spend hours in her own 'world' the woman's name is Temple Grandin. While Kellsey might not have Autisim, the book can be helpful in 'seeing' the world you speak of that kellsey easily inhabits. It is also facinating because Temple went from being closed off to the world to the formost expert on a particular type of cattle farm equipment!!

Hi, I love hearing about Kellsey so much. She reminds me of me. I am HFA/SPD (High functioning autistic and Sensory Perception disorder, previously SID (Integration disorder) I prefer to live in a Parallel world but its just not acceptable to 99% of the people 99% of the time. My husband (the one percent) allows for this for 1 full hour in the morning (and all time while he is at work) while he makes me breakfast, gets my meds, turns on my music and takes care of our pets. If I don't sleep, I have a horrid day. Today felt like I was watching myself from outside of myself. My husband said it scared him. It was weird. I do feel better though. Now, I cannot sleep without being medicated. I found that valerian root helps with anxiety though something stronger is needed for sleep. my question is Can you give Kellsey something natural to help with sleep? And it doesn't sound like any one has told you this yet, BUT OMGOSH to the ones who can't accept people like me and Kellsey. Just let it go. We are perfect the way God made us. The lesson to learn is definitely not ours. oh yeah, SPD, sensory issues. It sounds like Kellsey may have some. Can someone with Down Syndrome also be Autistic? She sure does sound a lot like me. Hugs to you and your family.

Welcome!

Welcome to my blog where I take on day to day life with my four amazing children: Kassidy, Kameron, Kennedy & Keeghan, and a husband in the Military. Join us as we face issues with Down syndrome, Leukemia, Deployments, and every day life with 4 young kids! You'll be in for the ride of your life!

About Me

My name is Renee, I am 35 years old, I am married to the Army... oh wait I mean I'm married to a Soldier, my hero. Same thing right? I am a misplaced Californian who lives in Colorado by way of Tennessee. I am a mini-van driving dance mom... I try not to be a crazy one! I am blessed to be able to stay home with my 4 amazing kids. Kassidy: my beautiful, too smart for her own good, funny, dramatic 14 year old who is a self proclaimed nerd. Kameron: My high strung, smart, artistic, creative, silly, sometimes mysterious 12 year old who loves musical theater and acting. My 10 year old diva, Kennedy: who will most often be found dancing, shopping for purses or dreaming of her boyfriend, Ben. She's destined for the stars! and Keeghan: my crazy, funny, silly, handsome 7 year old monkey who loves to ask me a million questions all day long... I'm so incredibly blessed.